One Thing That’s Kept Me Busy…

Many surprises and opportunities have fallen into my lap over the last six months, it’s hard to imagine that so much could happen within the confines of the four walls of my bedroom. Outside of telling close friends, I’d decided initially that I was going to keep fairly quiet about two of the projects until they were completed. As things are going, my chances of being around at the time of completion are getting slimmer and I’m being graciously guided as to what information I can share while I’m still here to tell you myself. Sounds a little mysterious, doesn’t it?

Followers of my blog might remember that I had a pacemaker implanted about ten years ago. I’d been diagnosed at the time with vasovagal syncope, sudden and significant drops in my heart rate were causing me great discomfort often resulting in me ending up on the floor in a faint, or near faint. Injuries were a common occurrence, sharp corners on furniture had a way of leaping into my path. This condition was preventing me from leading a normal life; I couldn’t drive, work or take care of my daughter in the ways I would have hoped.

Thankfully the pacemaker returned me to a fairly normal life for a few years, until I was diagnosed with Erdheim-Chester Disease in 2009. If you’ve been following the blog you’ll have a fairly good idea how things progressed from there, cardiac issues continuing to be of major concern.

When I signed my Do Not Resuscitate order early last year, I had to give pause as to how my pacemaker would be handled. As I mentioned a few months ago, I’d already decided that I wouldn’t have the pacemaker replaced when the battery died.

Two concerns quickly came to mind. The first, if my daily health issues were already so challenging, what would they be like with a non-functional pacemaker on top of that? Knowing my triggers of ten years ago, even getting out of bed to go the bathroom would be out of the question with an expired pacemaker battery. I also had to consider that ten years ago I was in otherwise better health, a much sturdier state than I’m in today.

The other concern was whether the pacemaker is keeping me alive artificially. Might I have already died if it hadn’t been bringing my heart rate back up again after every crash? The data downloaded from my pacemaker over the last ten years tells us that I average at least forty major drops a day.

A year and a half ago, I set out to have my questions answered in preparation for a time that might come when it could appear that the pacemaker was the only thing keeping me alive. What rights did I have as the patient to have the pacemaker turned off?

The path has been a complicated one. The charter of rights of Ontario clearly states that I have the right to have the pacemaker turned off, in the same way respiration or dialysis treatment can be refused. On paper a clear option, not so clear in practice.

About six months ago I was speaking at length with a member of the Ontario Dying With Dignity association about my questions and concerns, when she asked if I might consider speaking with a representative of the CBC whose team was producing a documentary on end of life issues facing Canadians.

I did speak with the CBC and was asked if I would consider participating in the documentary, and I agreed with one stipulation. My daughter Suzanna had to be fully supportive of my involvement, it would be another four weeks before she was finished her exams and I didn’t want to raise the idea of my participation until she had cleared her plate.

The documentary is scheduled to air sometime in November, which will tell you that Suzanna did indeed give her blessing to the project.

There a few points I’d like to raise. First, the CBC team has been absolutely wonderful to work with. Not only have they been very appreciative about how much energy this project has taken out of me and make every effort to lessen any burden on me, they’ve been at every point very respectful and compassionate towards me and Suzanna.

I’m going to use the term “dying a gentle death” as a way to describe what I’ve been trying to achieve for the end to my own story. Each of us will have our own perspective and feelings on the issues of when modern medicines and medical procedures ought to be used to try to extend life, and we will also will have our own thoughts on when it’s appropriate not to intervene.

My decision to participate in the documentary comes from a desire to allow other Canadians a chance to “walk in my shoes”. You may find yourself agreeing or disagreeing on some of the points raised, to that you’re perfectly entitled. What I do ask is that if you feel compelled to speak out on whatever your position might be, that your comments please be directed to those in our government who can speak on your behalf.

Suzanna and I are trying to do what’s best for the two of us. Despite going public with our story, ultimately for us this is about a mother and daughter who love each very much, neither of us wanting the other to suffer beyond what we feel we can handle.

A side note: it took me a few weeks to find the words and the courage to share this post. Two emergency calls for help this past weekend had me and Suzanna again revaluating time lines and decisions, encouraging me to share this information sooner than I might otherwise have done so. It was my wish that you hear about the documentary from me rather than recognize my name spoken on your TV one evening a couple of months from now. I’m grateful to my CBC team for giving their nod to sharing this news before the piece is complete.